Ependymoma Awareness Day 2014

Ependymoma Awareness Day 2014

In an effort to raise awareness of ependymoma, patients, caregivers and medical professionals from around the world dedicated April 10, 2014, as the third annual Ependymoma Awareness Day.

The butterfly release was held at the beautiful Houstonian Hotel in the Meadow at 2 p.m. on Thursday, April 10, 2014. Over 700 butterflies were released to honor loved ones with ependymoma and support ependymoma research. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as it symbolizes hope through change. The butterfly release was videotaped and posted to the internet so that supporters around the world can participate and share in this moving event!

Our hope with Ependymoma Awareness Day is to increase public recognition of this rare tumor and the need for clinical studies to improve early diagnosis, standardize treatment and improve the health status of those living with this disease.

The CERN Foundation would like to thank all of you that have participated in this moving and unique event. Your efforts and donations will help us immensely in creating awareness about this rare disease, and ultimately help in our research efforts to find a cure for ependymoma.

To purchase a lapel pin, temporary tattoo, hat or donate, click here.

Kim Wallgren Speaks At Ependymoma Awareness Day

Wallgren Delivers Speech at Butterfly Release

Kim’s father was diagnosed with anaplastic ependymoma twelve years ago and she works as the Patient Liaison for the CERN Foundation. Kim communicates directly with the ependymoma community, helping patients and caregivers.

Kim says, “Today as I stand here in front of you all, I no longer represent my own story but I represent all of your stories. My voice no longer sounds for my own family but echoes for all of yours.”

Ependymoma Awareness Outreach

On a local level, many chose to participate in activities to create awareness about ependymoma where they live.

Proclamations

Twenty four city and state governments have shown their support by issuing proclamations naming April 10, 2014 as Ependymoma Awareness Day; including: Austin, Chapel Hill, Cincinnati, Columbus, Houston, Illinois, Indiana, Madison, Massachusetts, Memphis, Michigan, New Hampshire, New York, North Carolina, Ohio, Oregon, Pittsburgh, Santa Barbara, Seattle, Shelby County, Texas, Trigg County, Washington D.C. and Wisconsin.

Ependymoma Awareness Worldwide

Ependymoma Community Gets Involved

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking April 10, 2014, as Ependymoma Awareness Day.

Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences through news services, on Twitter and Facebook pages. Share your story or blog with us!

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